Questions to Ask Before Ordering Direct-to-consumer Genetic Testing

You’ve probably seen a TV commercial at one time advertising a genetic test that you can order on your own. There are direct-to-consumer (DTC) genetic tests out there for learning your ancestry, your carrier status (risks for having a baby with a genetic condition depending on your partner’s genetic status), predisposition to disease, as well as learning about different traits you may have.

It can be very appealing to order a test and submit a saliva sample from home, especially when the DNA analysis seems relatively cheap. Here are some things to consider in case you’re thinking about ordering your own genetic testing:

Are you hoping to make medical decisions with this genetic test?

If you answer yes, I would recommend that you hold off on ordering the genetic testing. Consider speaking with a genetic counselor, or another genetics provider who can discuss implications of genetic testing with you.

If you answer no, then I would assume this type of testing is for ancestry. Many individuals are curious about “where they came from” and this type of testing may be able to provide answers.

Does the company have genetic counselors on staff that you can speak with?

If you’re going to undergo genetic testing without a clinical provider who has genetics knowledge, you may be able to speak with a genetic counselor on staff at the laboratory. While this can be helpful, they may not be able to give you as detailed information as a clinical genetics provider who knows a lot about your personal and family medical history.

Do you fully understand the extent of what information you will receive from this genetic testing?

It can be confusing to determine what kind of information you’re going to get from a genetic test. There are some instances where labs only look at certain parts of a gene and not the entire gene, which can give you an incomplete picture. A genetic counselor will let you know ahead of time what information you can expect to receive.

Sometimes a negative or “normal” genetic test result can be confusing without a genetics provider to explain what it means for you specifically. People with negative genetic testing results relevant to hereditary cancer may still be at an increased risk for certain types of cancer, depending on their family history. Even if a test comes back “normal”, a person could still be recommended to have increased screening compared to the general population’s screening recommendations.

Is the laboratory CLIA (Clinical Laboratory Improvement Amendments) certified and CAP (College of American Pathologists) accredited?

There are certain standards that clinical laboratories are held to within the United States to ensure quality and safety. Not all labs who are offering genetic testing directly to consumers meet these standards.

For more information on things to consider when it comes to direct to consumer genetic testing, check out the Federal Trade Commission’s website.

Sarah AdelspergerSarah Adelsperger, MS, LCGC, is a board-certified genetic counselor specializing in cancer. Sarah joined Kelly Morse, MS, LCGC, in the Cancer Genetics Program in May 2015 at ProMedica Cancer Institute–the only program in Northwest Ohio and Southeast Michigan with two licensed and board-certified genetics counselors specializing in cancer genetics.